Monday, August 01, 2005

After a week at home

Hi, all. Sorry for the long silence since our last update. I’ve been at home since the 22d, enjoying it very much—spending time with Anna and various friends, going out to eat (including a couple of really wonderful meals), resting… I’ve felt stronger each day, able to do more before having to rest, able to sit up longer to eat and talk and laugh and read.Not that the week was entirely free of medical events. On Wednesday I had yet another bone marrow biopsy, this time as an outpatient at the Southwestern Regional Cancer Center, which is, fortunately less than a mile from our house. On Thursday I went back to the hospital as an outpatient, to have a device unfortunately named a PortOCath implanted—a catheter into which chemotherapy and other drugs can flow and from which blood samples can be drawn; and on Friday Dr. Tucker called with the welcome news that I’m still in “complete remission,” no leukemic cells in evidence.This morning began a whole new phase of this adventure: consolidation chemotherapy, on an outpatient basis (yay!). We arrived dutifully at 8:15 for our 8:30 appointment. A little before 9:00 a nurse came and got me and took me to the room where they draw blood samples, then led me back to the waiting area. Some undetermined amount of time later—felt like forever, was probably something like 15 or 20 minutes—another nurse came and ushered me into what I think they call the Infusion Room—a large, open room with hardwood floors (!) and 16 big soft leather reclining chairs. She sat me down, and very quickly realized we hadn’t received even rudimentary patient education in what was about to happen; so, patiently, she described the process, explained the potential side-effects (ugh), etc., etc. She gave me an anti-nausea drug, then, at about 10:30, finally started the chemo going. Anna sat in the next chair with her laptop, working hard on a major presentation in between calls to our nutritionist and listening to explanations of the chemotherapy; an hour or so later she went to meet Diane, her assistant, for lunch, then came back with a burger, fries, and milkshake for me (still have those high caloric requirements, you know!). And at 1:15 the chemo was done, and a few minutes later we headed for home.Tonight I’ll have my second dose of the day—a home health nurse will come to the house to start it at 10:30 PM (12 hours after the first dose started) and clean everything up when it’s done at 1:15 or 1:30 AM…We repeat the process on Wednesday and again on Friday, but there will be some differences. The IV will take only 90 minutes instead of the nearly 3 hours it took today, and hopefully it will start well before 10:30 so that the second dose can start and end earlier too. Also, they’ll be sending me home with my very own bag of chemo and an IV pump to administer it, all in a convenient fanny pack. The pump’s about the size of one of the early transistor radios, and there are only two buttons that I need to know about: a start/stop toggle and an on/off switch, which are on different rows and even differently shaped so I can tell them apart. We’ll have to learn how to flush the catheter with saline solution and Heparin (to clean it and keep it from clogging), using pre-loaded syringes that they’ll also send home with us, and which they’ll mark so I can tell them apart by touch.So… off we go, into the wild blue yonder—I’ll have four of these cycles, at intervals of three or four weeks depending on how well I tolerate the high dosage. And of course they’ll be doing blood counts (for each cycle there will be a nadir when my white- and red blood counts and my platelet levels bottom out, then they’ll come back up to normal levels); and I have a funny feeling there’ll be more bone marrow tests and a host of other things. I’ll probably whine about all of it, but I’m actually enormously grateful that the medicines and technologies have reached a state of development that allows chemotherapy as an outpatient (even at home!) and gives me a fighting chance. And of course I’m grateful, too, for the love and good wishes that keeping coming to me from Anna and Dillon—that’s such vital energy!Many, many thanks, and much, much love.More to come.John, Anna, and DillonP.S. For those of you who are in Austin—we welcome visitors! (We’ll need to be careful when my counts bottom out, but other than that---). So please call us!